Spreading awareness and support - what would you want to see?

[EmilyK]

I'm making my PANDAS awareness to do list as it pertains to my work at the RI dept of ed and here are some of my initial thoughts for a to-do list:

 

info packet on math and writing learning disabilities and connections to PANDAS/PANS for special ed directors and school psychologists (I'm point in our office on developing guidance to school districts on learning disabilities, other health impairments, and emotional disturbance in the state)

 

awareness brochures and or table display or something at an upcoming statewide summit on social emotional health being co-host by Bradley hospital and RIDE August 2nd (we're inviting school district leaders, reps from school guidance programs, social workers, psychologists, school resource officers, and more and working with CASEL on putting together the day with the goal of developing a statewide action plan to support social emotional education in our schools in RI)

 

continue the stream of info we've started to school nurses and special ed directors and to heads of school psychology programs at URI and RIC

 

build parent resources related to PANDAS at both the RI Parent Information Network and Parent Support Network

 

bring awareness to the RI Special Education Advisory Council facilitated by my co-worker

 

get in front of legislators with educational and mental health interest - this needs more thought of course, but it won't be hard for me to connect

 

I'd welcome any suggestions, angles, critical pieces to include, things left out in my thinking.

best,

Emily

[LNN]

You may want to contact Pandas Network for literature. They are a NIMH Outreach Partner and may have literature from the NIMH that would be applicable.

 

I used to spend a lot of energy trying to educate teachers about the disease. Lately, I've had much better success glossing over the details and just focusing on what symptoms to look for and what tools they can use in the classroom. I now tell teachers "You won't see the OCD - he'll hide it or make it look like a fidget. You may or may not see the dysgraphia, you may chalk up small signs of adhd to being a boy. But you'll know he's in a flare when it dawns on you that you've uttered his name 50 times today. As in "D, sit down. D, pay attention. D, worry about yourself. D, stop talking, D, pencils are not swords..." It will suddenly hit you that you don't normally say his name as much as you have this week. You won't see a flare, you'll hear your response to it."

 

So my point is to highlight that changes can be subtle and not out of the bell curve of normal for any group of kids. What will be notable is that you'll see a conglomeration of changes all at once that are abnormally intense/different for my particular child. He will be outside his own bell curve of normal.

 

I would include dysgraphia and the suggestion to use graph paper in math or to add a lightly printed grid onto worksheets

allow frequent bathroom trips, regardless of whether you feel they're necessary. They often are.

highlight that adhd appears or intensifies in a flare

Suggest that if they find themselves scratching their heads over a child who started the year on track but now seems to need meds for adhd, or is suddenly not the same student, consider Pans.

 

I would print out the article on the IOCDF site http://ocfoundation.org/PANDAS/ and the article by Tom Insel http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml and http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml

 

This one is old but one of my favorites http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/ What every psychiatrist should know about Pandas - great overview.